Waiting for test results is a way of life for cancer patients and it never seems to get easier. One would think that after nearly three years of monthly blood tests and daily blood tests during stem cell transplant, several MRIs and CT scans, and multiple bone marrow biopsies, waiting for results would get easier.
Last Monday, I had yet another bone marrow biopsy because my last blood work showed that the lambda light chain (a myeloma marker) had gone up out of the normal range. My oncologist keeps me on a tight rein so he said a bone marrow biopsy was needed to see exactly what is happening. So now, I am in "waiting for results" limbo. It isn't easy but I suppose in some ways it has become somewhat less daunting. I find that I don't spend every day worrying about it now and if the news isn't good, it won't be a shock. My appointment with my oncologist to get the results is next Thursday and I do know as it approaches, I will become more on edge. However, I have been through this many times and I have survived the ordeal before, so I know I can do it again.
I recently received the latest Patient Power posting and there is a very encouraging interview with Dr. Sagar Lonial, Professor at Winship Cancer Institute of Emory University, Director Translational Research, Emory Healthcare. Dr. Sagar discusses "Using Combination Therapy to Treat Multiple Myeloma." In light of my recent setback, I felt more hopeful after listening to this interview:
www.patientpower.info/video/using-combination-therapy-to-effectively-treat-multiple-myeloma/?autoplay=1&utm_source=event-list&utm_medium=email&utm_campaign=myeloma-2012-columbus&utm_content=thumbnail-title
Saturday, November 24, 2012
Saturday, November 10, 2012
Reality Was Waiting
When I returned home from our European Escape, reality WAS waiting for me. Shortly after recovering from jet lag, I had to go to the clinic for my monthly blood work. A week later I saw a physician's assistant to get the results because my wonderful oncologist was on vacation. Lately, when I have had blood work done, I have been worried about my lambda light chain because it has been trending up over the last few months but staying in the normal range. This time my worry was warranted because the numbers had moved out of the normal range and the ratio between the kappa and lambda light chains had gone down. It was upsetting to see those numbers even though I have been expecting it to happen.
Fortunately, my oncologist got home and I was able to see him two days later because of a cancellation. What a relief it was to talk to him. He doesn't sugar coat things, but he always calms me down. Together we decided that a bone marrow biopsy is in order. After we get the results, we will know what the next steps are. He may want me to go back to Seattle Cancer Care Alliance for a second opinion. SCCA is where I had my stem cell transplant.
It is so hard to think about beginning the battle against multiple myeloma again. In yoga class it struck me that I was there trying to make my body strong, but the myeloma cells may be on attack trying to harm me. I am trying to keep positive thoughts and am thankful that my doctor has kept me under monthly "surveillance" which makes it likely that any misbehaving cells may just be getting started.
If it turns out that I have relapsed, then it is time for a SLAP DOWN!
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Fortunately, my oncologist got home and I was able to see him two days later because of a cancellation. What a relief it was to talk to him. He doesn't sugar coat things, but he always calms me down. Together we decided that a bone marrow biopsy is in order. After we get the results, we will know what the next steps are. He may want me to go back to Seattle Cancer Care Alliance for a second opinion. SCCA is where I had my stem cell transplant.
It is so hard to think about beginning the battle against multiple myeloma again. In yoga class it struck me that I was there trying to make my body strong, but the myeloma cells may be on attack trying to harm me. I am trying to keep positive thoughts and am thankful that my doctor has kept me under monthly "surveillance" which makes it likely that any misbehaving cells may just be getting started.
If it turns out that I have relapsed, then it is time for a SLAP DOWN!
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Me with my beautiful daughter, Marisa
Wednesday, November 7, 2012
European Escape
It was three and a half weeks of magical thinking. I was nine time zones away from home and my day to day life which always includes multiple myeloma lurking on the edge of my consciousness. No matter how well I am feeling or busy I am, the spectre of multiple myeloma is always present. It is astounding what several thousand miles, several time zones and a different continent can do for my thinking; it becomes magical. In Italy, Germany and Mallorca multiple myeloma was so remote from my mind that I could just about imagine that it really didn't exist in my life. Magical thinking.
Our first stop was Bologna Italy which is considered the food capital of Italy.......and, therefore, the world! Bologna is a beautiful city with a color palette of terra cotta, ocher and warm earth tones. It is known for its 23 kilometers of porticos lining the streets. The porticos were stunning! Some were elaborate and some were rather plain but they were an amazing sight to see. The University of Bologna,established in 1088, is the oldest university in the western world. It was exciting to visit the campus and mingle with the students. Our hotel had a lovely rooftop terrace with fabulous views in every direction.
View from our rooftop terrace in Bologna.
From Verona, we took the train to Weilheim, Germany and the home of my brother-in-law and sister-in-law, Larry and Joan. We hadn't seen them for a year so it was wonderful to catch up on things, reminisce, laugh and enjoy delicious food prepared by Joan and Larry in their cozy home. Weilheim is a beautiful Bavarian town with a population of around 25,000. We enjoyed shopping and relaxing and, of course, we did have beer! Nearby Andechs Abbey is famed for its Baroque church (1712) and its brewery where the monks have been brewing beer for centuries. On a beautiful sunny day we made the pilgrimage to Andechs to enjoy beer and pretzels out on the terrace. The big pretzels and delicious cheese were perfect partners to the cold, frosty beer. It was a church holiday so it was crowded with happy celebrants.
The view of Castell de Capdepera from Es Clape
I felt a little like Max as I waved good-bye and boarded the plane and flew over Europe and in and out of time zones and over the ocean and across Greenland and North America and back to Seattle where I found my real life waiting with blood tests and oncologist visits . . . more on that later.
Our first stop was Bologna Italy which is considered the food capital of Italy.......and, therefore, the world! Bologna is a beautiful city with a color palette of terra cotta, ocher and warm earth tones. It is known for its 23 kilometers of porticos lining the streets. The porticos were stunning! Some were elaborate and some were rather plain but they were an amazing sight to see. The University of Bologna,established in 1088, is the oldest university in the western world. It was exciting to visit the campus and mingle with the students. Our hotel had a lovely rooftop terrace with fabulous views in every direction.
My favorite portico in Bologna
Our next stop was beautiful Verona. We stayed at the Hotel Guilietta e Romeo near Piazza Bra and the Roman arena. Did you know that Verona has pink and white marble sidewalks? It seemed almost unbelievable that any city would have marble sidewalks, but then I learned that Verona is the center of the marble industry and over the centuries it it has been their most abundant building material. Verona is a lovely city with so many things to see from an ancient Roman amphitheater to Juliet's balcony. We walked miles or should I say kilometers, toured, dined on fabulous food and ate gelato everyday. We loved Verona.
Verona
Hotel Guilietta e Romeo in Verona
Notice the white marble sidewalk in front of the hotel.
This first century AD Roman arena in Verona still in use
today for opera, concerts and other events.
From Verona, we took the train to Weilheim, Germany and the home of my brother-in-law and sister-in-law, Larry and Joan. We hadn't seen them for a year so it was wonderful to catch up on things, reminisce, laugh and enjoy delicious food prepared by Joan and Larry in their cozy home. Weilheim is a beautiful Bavarian town with a population of around 25,000. We enjoyed shopping and relaxing and, of course, we did have beer! Nearby Andechs Abbey is famed for its Baroque church (1712) and its brewery where the monks have been brewing beer for centuries. On a beautiful sunny day we made the pilgrimage to Andechs to enjoy beer and pretzels out on the terrace. The big pretzels and delicious cheese were perfect partners to the cold, frosty beer. It was a church holiday so it was crowded with happy celebrants.
Weilheim city square
Brent and his sister, Joan
Andechs Abbey
Andechs - Marisa
Helmut and Larry on the terrace at Andechs
Me in awe of all the empty beer mugs at Andechs.
After several days in Weilheim, we all flew to Mallorca, Spain to spend a week in a villa in Capdepera. The villa was situated on a hill above the village of Capdepera and the view was stunning. Castell de Capdepera was across the way and it was a view we enjoyed throughout our stay. At night, the castle was illuminated and that was quite a sight to behold. The weather was pretty nice and Brent did get to spend a couple of days on the beach. We spent a day in the beautiful capital city of Palma and even witnessed an anti-austerity protest at city hall! We enjoyed the sights and tastes of Mallorca and it was especially nice to go home each day to the villa where we were warmly greeted by the neighborhood cat.
The Villa: Es Clape
Marisa and I enjoying yogurt and fruit in Capdepera
The sweet neighborhood cat
After 23 days, our European Escape finally came to an end. Many lasting memories were made, tons of pictures were taken, we met new friends, we ate and we talked and we walked and walked. It was three and a half weeks of magical thinking, but it couldn't last forever.
As we were flying home, I was reminded of Maurice Sendak's children's classic, Where the Wild Things Are.
At the end of the story ...
"Max stepped into his private boat and waved good-bye and sailed back over a year and in and out of weeks and through the day and into the night of his very own room where he found his supper waiting for him."
As we were flying home, I was reminded of Maurice Sendak's children's classic, Where the Wild Things Are.
At the end of the story ...
"Max stepped into his private boat and waved good-bye and sailed back over a year and in and out of weeks and through the day and into the night of his very own room where he found his supper waiting for him."
I felt a little like Max as I waved good-bye and boarded the plane and flew over Europe and in and out of time zones and over the ocean and across Greenland and North America and back to Seattle where I found my real life waiting with blood tests and oncologist visits . . . more on that later.
A stunning view of Greenland.
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